5 cardiologist but no definite diagnosis.

Hello I am 42 yrs old and was born with a congenital heart condition called Transposition of the Great Arteries. Your story sounds a lot like mine. I had an ablation 1 1/2 (yr) ago to stop going into atrial flutter. The ablation worked but I had a complication that arose from it.

And here's where yours and my story become similar. 2 weeks after my ablation i got sick to my stomach and my heart started beating oddly. In fact I can feel every single heartbeat. And for months my doctor said I was having PVCS. Well 6mths later I can barely function I get dizzy, headaches, shortness of breath. I can feel my heartbeat 24/7 (especially if I lay on my left side) so I said I would like another ablation to correct this, for PVCS. I had to have a completely awake ablation with no sedation.

During the ablation they knocked out the PVCS but also found out I was in a JUNCTIONAL RHYTHM. And I am in it 100% of the time.

Its not the PVCS making me feel awful its the JR. And it took multiple drs to figure this out.

Now Junctional is curable they can knock out your SA node and permanently install a pacemaker to fix this. However in my case its not possible (too long of a story to get into). But maybe this is what is happening to you, it's a long shot but I wanted to tell you, you are not alone I've been living with this for 2 years and its awful , I feel like garbage everyday. There is nothing that can help me unfortunately but maybe they can help you.

Good luck!

99% of what you described feels so much like my story. The tilt table n all, they found was meniere's, then in 2018 things go bad, I dropped from 180 lbs to 94, i started having anxiety really bad, my vision was out the window along with severe light sensitivity there is a lot of things that were not right. Coming to find out I had Graves disease so severe that I was almost in a thyroid storm but all my test came out normal for the most part, until they finally checked T3, T4 and tsh they were so high they were 20x the cut off. Sorry about that until 20 21 when I finally had a thyroidectomy. However that was just a beginning of my problems cuz I never fully recovered from getting my thyroid out but it ended up burning out my heart cuz it speeds up your metabolism your thyroid runs a lot of stuff in your body and it's like homebase of all our systems. But they wouldn't listen to me when I kept telling them the medication is not working we need to do something about it before I got to the part of heart failure, because in September of 2022 I did have a massive heart attack. And fast forwarding since 2022 of my first heart attack I had another heart attack and a partial stroke. Systolic and dysolic heart failure, I have less than 10% left ventricle function within an enlarged heart and I needed a defibrillator cuz they're worried about me having sudden death they had to also break down to thrombosis with 100% blockage I also have high blood pressure and I'm diabetic all because I didn't do the right tests and listen. And when I asked the doctor the first time I went for my checkup I point blanks specifically to ask if I need to get my affairs in order because I had children and they told me no my heart was going to get better and that was incorrect, because it's too late to fix what's wrong now. And going to the doctors they just push you up onto another one I have four cardiologists and I just take it day by day and there's nothing I can do about it. The biggest thing that I have had the problem with coming to terms with all of this is the fact that they would not listen, in the more you try to understand the more it looks like you're questioning them being a doctor or when they have you go to another doctor and none of their opinions match then you're drug seeking and Doctor hunting but they totally Miss the real problem that makes you feel like you're going crazy or you as a being do not matter. I had to become my own advocate and start getting more vocal about everything not taking I don't know or pushed off on another Dr as acceptable answers, We know our bodies better than anyone!

Have they ever checked you for Addison's disease that can make your heart feel BT that can make you lose weight and that can make you feel sick. Have they checked you for a thyroid your TSH your t3 in your t4.. have they done an MRI on your brain and checked you for a pituitary gland. Anxiety and depression can make you lose weight really fast too and worrying too much to make you lose weight too.

I just want to say that our life stories are quite similar.
I also have C-PTSD, but with ADHD as well.
I was very underweight growing up as well. (Then menopause hit, I shattered my wrist, and covid became a thing all at the same time. Then the weight piled on. Lol!)
But I digress.
I too have been suffering from many odd symptoms :
palpitations, chest pain, dizziness, cold hands and feet, tingling/numbness, racing and pounding heart, mood swings, worsening tinnitus and headaches, nausea…the list goes on.
When I was born, I had an arrhythmia. The doctor told my mom that my heart was only 3/4 of the size it should be. ( I need to point out here that they wouldn’t have known about it IF I wouldn’t have been born with bronchitis due to an infection that my mother had. This led them to do X-rays etc and my heart size was seen.)
Over the years I would have “butterflies” in my chest every time I had a growing spurt. They said I was suffering from anemia during those times as I would become very pale and dizzy. So they told my mom to feed me liver. Ahhh!
This did not work. Only bed rest seemed to help.
Over the years it seemed to calm down a bit, but in my late 20’s it got worse.
I was constantly at the doctors office. They performed stress tests and nothing happened…until I sat down to get dressed again. By the time the nurse came back to escort me out, the pain, rapid pounding, and dizziness would be gone. Of course they didn’t believe me!
The doctor said I was either a hypochondriac or I had anxiety.
My mom ( who also had the same doctor) told him about my heart as a baby/child. He said it was definitely anxiety.
He gave me Paxil and sent me home. Things got worse.
I went back and he gave me Effexor. I became suicidal.
He tried me on lithium pills as he thought I was psychotic.
I became worse and worse. It’s a living nightmare!! I got to the point where I refused to take pills and became extremely fearful of medication!!
I quit seeing that doctor as even thinking about him made me sick.
I moved to another city. I found a new doctor. We’ll call him Dr L. He told me that my symptoms were all in my head and sent me to see a psychiatrist. The psychiatrist believed me?!?!?!! She said to go to a walk in clinic and get a second opinion. Which I did. My nausea was caused by a big old ulcer!!
I told Dr L about these findings and he was angry that I sought help elsewhere?!? I was forced to sign a contract stating that I would never go to a walk in again.
He finally sent me in for a Holter monitor, which I wore for a week. The hospital called and said that the battery had died at some point and all data was lost!?!? Noooo!!!! They put another one on me for the night. Nothing happened! Of course. So they said it was probably anxiety.
Every time I had an appointment ( between the ages of 28-54) I was told that my blood pressure was on the high side of normal. Nothing was ever done about it.
I was forced to remain with Dr L for 16 years (as family doctors are impossible to find where I live) I switched doctors when I saw that a clinic was accepting new patients. This new doctor said he did NOT want to know my history. He wanted to give me a fresh start! What!?!?! Wow!!!
He said that my blood pressure was a little high and that he would continue to check it.
I kept going in and complaining about symptoms. He said he wanted me to see a psychiatrist.
The psychiatrist diagnosed me with C-PTSD and ADHD. He gave me some pills. He promised it wouldn’t be like the past episodes. He convinced me that life would be great.
I finally agreed to take a pill in front of him. I sat in the office for an hour. Nothing bad happened, so I went home and took a second pill the next day.
I had a severe headache! My heart was pounding and racing and flip flopping and I couldn’t breathe. I went to the hospital. I was having a stroke!?!?!
This happened several months ago. My face is a bit droopy and I drop things but I’m ok. I’m alive.
My new doctor set me up with a specialist ( internal medicine specialist) who hooked me up with a newer type of monitor ( new to me anyway lol) and I wore it for a week. The info was sent directly to an office where I was being monitored 24/7. Cool!
So this happened last week. He called me on Sunday. Yes, on a weekend! And he told me that it’s NOT all in my head! He said that if it wouldn’t have been for the mini stroke and the ADHD pills setting off an attack, that I probably still wouldn’t know. He says it’s definitely SVT, and now I’ll have more testing done to see how much damage has been done to my heart etc.
It’s like a weight has been lifted!!!
I’m scared as heck about the results, BUT I’m SO happy that they now know and believe me!!! That in itself has released some stress!
So far I know that stress and even small amounts of salt will trigger an attack. So half the battle has been won!

Side note: I told my therapist about the diagnosis yesterday. She insists it’s anxiety…as that is what they are taught!

I seriously hope they diagnose you soon! Not in a bad way!!! Lol!! Hope you get good news!

He might have something called stv heard something called inappropriate inappropriate tachycardia or you might have something called this wrong with your automatic nervous system. It might help after a cardiologist or primary doctor prescribe something called Corona.

You should ask for an echo would a bubble study to see if you have a left to right or you should ask for a stress echo red bubbles with a bubble study. Best of luck to see what's going on at your heart.

I definitely have thyroid problems and have been on medication for it since I was 17 yrs old. I was told at that time that my problem was so severe that I was lucky to be alive. I have taken high doses of Synthroid daily for decades. I cannot take the generic since it does not work the same on me. Anxiety is a fact of life for me. The good news is that I have been aware that my thyroid problem is a factor and if I ride it out, the depression and anxiety will pass, usually within a week or two. It helps to know that. I have a really exceptionally great endocrinologist whose speciality is thyroid problems. I feel grateful and fortunate to be alive and to have the good life I have had. Thank you for your thoughtful and accurate analysis. 💖✝️💕😊

The answers to my arrhythmia problems finally came with genetic testing. I saw a genetic cardiologist and was diagnosed with gene that causes arrhythmias (many PVCs) and eventually cardiomyopathy. Genetic testing is important because with my gene a specific pacemaker/defibrillator is needed. Also, you should not be ablated if your problem is genetic. Many foods, such as gluten can trigger PVCs. I would definitely google them and stick to an anti-inflammatory diet. Hope this helps 🙏